Gentle Approach

Well, it looks like I'm getting what I hoped for. More and more people are approaching me and being clear that they know Nate has DS. Today at church, I had 2 people approach me. The first told me she is a cytogeneticist. She wanted to make sure I knew she'd be happy to talk with me if I had any questions. The second was a woman who has a 20 year old brother with DS. She approached very gently (it's clear she understands the mixed emotions I have). She introduced herself and her husband and asked my name. She then commented on how she had been watching me with Nate during the service and thought he was so cute. This is the point when I usually get a little uncomfortable since I know he is not the conventional "cute" and that it is sometimes the word people use because they don't know what else to use. But this time was different. Since she had approached me so intentionally, I knew there must be something more. I paused for a moment and she jumped in to share about her brother. I could see in her eyes that she adores him and really wanted me to know how much he means to her. She had seen us in church a couple of weeks ago and told her mom about us, so her mom has also extended an invitation to talk.

I so appreciate these exchanges. But, I've found, I'm still not all that ready to talk with those who have experience with older children or adult with DS. I can handle infants and toddlers - I don't have set expectations for those little ones under 3 or 4. But once they get into school and beyond, that is where I feel challenged. There is just such a wide range of ability.

So, for right now, I'm just going to continue enjoying my sweet little 5 month old. He is honestly the sweetest little guy (well, except for those few hours in the afternoon when he just won't sleep). I'm working hard to not have specific expectations for him, but to allow him to develop in his time with our help.

And when I'm ready, I will be thankful for all of the people who have stepped forward to share their thoughts, advice and experiences.

-Danielle

More Smiles

For quite a while Nate's smiles have been sporadic at best. Now they are finally beginning to come pretty regularly and we are finding we don't have to make complete fools of ourselves to get them. He gives us full face grins which are so great! We're finding he really loves dancing - smiles come quickly when we turn up the tunes and dance around the kitchen with him.

Many have asked how Nate is doing. It's such a hard question to answer. I do have checklists and lists that give ranges of when to expect certain milestones, but how do I really evaluate how he's doing? Well, this is what I know....he is responding very well to his exercises. His upper body strength is definitely improving and he's tolerating tummy time for longer periods each day. I counted to 34 seconds today as he held his head up in tummy time. He is also rolling from his back to stomach very easily. He continues to sleep well at night and not so well during the day. We still don't trust his hearing tests and will go back again for another test next month. He just doesn't respond to us like we would expect - we think he likely has hearing loss for higher tones - we notice he responds much better to Bob's voice than mine.

So, how is he doing? I think pretty well! He's making progress and that feels good!

-Danielle

Yes, People Notice

I went for an early morning walk with Nate this morning. It was a beautiful, crisp morning and Nate was enjoying looking at the trees while he snuggled close to me in the bjorn.

About halfway through our 45 minute walk, we met up with Harrison. Harrison is probably in his mid to late 80's and lives with his daughter and son-in-law. I hadn't seen him since the fall when I was doing my early morning walks to ease the back pain I experienced with pregnancy. Harrison likes to sit in his chair at the front of his driveway, read his newspaper, drink his coffee and talk with anyone who slows down enough as they pass him. I've enjoyed many conversations with him and always hope he'll be sitting there as I turn the corner to his street. Honestly, I was starting to wonder if he was still with us, so I was relieved to see him this morning.

I stopped to talk with him and he quickly alerted me that he did not have his hearing aids in this morning. Our conversation went something like this (with a lot of "huh", "what's that", and "could you repeat that dear" in between):

"Good Morning"

"Good Morning. Let's see your baby."

I pull back the hood on the sweatshirt Nate has on.
"Is he an oriental baby?"

"No, he has Down Syndrome."

"Oh, like the Governor of Alaska's baby?"

"Yes."

"Did you know ahead of time?"

"No."

"Would you have done anything about it if you did?"

"No."

We tried to talk a little more, but he was starting to get frustrated that he couldn't hear me well, so we agreed we'd talk again when he has his hearing aids.

So, this was the first time someone actually came right out and asked me about Nate. Sure, it wasn't the most PC way, but I just chalk that up to the fact that he grew up in a time when people like Nate would be shipped off to institutions.

Anyway, I can honestly say I had kind of convinced myself that others don't notice Nate's almond-shaped eyes (and flatter face, protruding tongue, crinkled ears, low muscle tone, etc). So, this morning was a good reminder. A reminder to be aware of the awkwardness that so many feel as they meet Nate. Most don't have the guts to just put it out there (I know I never did), but are certainly thinking that there must be something a little different about Nate.

I still haven't quite figured out if I just throw it out there anytime I introduce Nate, but I certainly want to be sensitive to sharing it if I see someone wants to ask, but is not sure how.

Surprisingly, my conversation with Harrison did not make me sad this morning. It actually felt good to have him say something so I didn't have to. I think I wish more people would just say something (with a bit more tact than Harrison, of course) so it didn't feel like the elephant in the room.

-Danielle

The Silent Type

I never have been attracted to the silent type. Now I'm truly being tested as I live with one.

I was at Target with Nate last night getting stuff for Cody's potty training day today (he's napping now, so I'm getting a break from the festivities). Anyway, Nate was in his carseat perched up on top of the cart and we were having a fine time shopping. I was almost done and feeling good. Then, I walked past another woman who had her infant perched as Nate was. She was looking in at him and they were carrying on the sweetest conversation. It seemed like he was just exclaiming everything - such volume and joy in his little voice.

I walked out of Target a bit sad and the sadness is carrying through the day today. The sweet sounds I hear from Nate are few and far between. I'd say his cries and complaints far outnumber the sweet sounds. So then I start to wonder - does this mean anything. I've often heard that children with DS are quiet, but how quiet? Is Nate even quieter than his counterparts?

Communication continues to be my biggest concern for Nate's future. Will he be able to express himself clearly enough for others to understand? Does his lack of communication now have a direct correlation to the success of his communication later?

I think only time will tell. God, grant me patience...please.

-Danielle

"Undersnake"

I just wanted to share a quick laugh from my time at the park yesterday. I was there with the boys and Cody asked to go on the swings. After settling him into the "baby" swing, he quickly requested that I give him an underdog (you know, where you push the swing as high as you can and run forward under the swing).

"Underdog, Mommy!"

I gave him an underdog.

"Undersnake, Mommy!"....he went on to ask for underelephants, undertigers, underlions.

It was one of those sweet moments I hope to remember for a long time.

-Danielle

Family Photos

We went to get family photos on Sunday and it turned out differently than I expected.

In the past, each time I'd seen pictures of us with Nate, I'd had a hard time. I don't notice his DS features as much anymore unless I see him in a picture. So, I was not at all looking forward to family pics.

But after we saw the pictures, both Bob and I felt much better. We saw our sweet little guy in a new way. We looked at those pictures and said, "this is OUR family".

It's still not the family picture we imagined, but we are settling into this new picture more and more.


-Danielle

Smiles for Mommy

Right after expressing my sadness about Nate's lack of Mommy smiles, our early intervention specialist witnessed Nate's first real smiles for me today. Wahoo!!! I haven't been able to capture one on camera yet, but as soon as I do I'll post it!

Nate is 4 Months old today!

-Danielle